How to Manage Early Dementia – What works/what doesn’t?

Dad was diagnosed with Lewy Body Dementia and I become his full-time live-in caregiver for 4 ½ years. Here’s what I learned:
·        Get a good Neurologist, one who treats Dementia and Alzheimer’s patients.
·        Everyone’s journey is unique. The stages of dementia will progress rapidly for some, and more slowly for others.
·        Learn to Redirect – Not Correct:  Learn techniques to shift a mom’s attention away from the situation that is causing anger, anxiety, fear or dangerous or unsafe behavior to a more pleasant emotion or situation.
·        Keep a Regular Routine: Dementia patients function best if they have a daily routine for waking, bathing, meal times, and sleeping.
·        Home is a Safe Haven: It becomes more difficult for dementia patients to leave their homes for appointments, etc. It helped Dad to make shorter trips rather than scheduling too many appointments on any given day. He also felt safer riding in the back seat rather than the front passenger seat.
·        Keep a Watchful Eye: I set up a baby cam in several rooms to allow my Dad his independence but I could respond when he needed help. He was none the wiser.
·        Food Preferences: Taste often changes so take a cue from Mom. Foods she once loved may be something she no longer wants to eat.
·        Time of Day: Get a digital dementia clock that not only tells the time but the time of day (morning, mid-day, sunset, night) to keep the patient more oriented as the day progresses.
·        Communicate: Use a dry-erase message board to communicate. They can read it when you’re not there and know what’s going on. I updated Dad’s schedule before I tucked him in at night. We also talked about what he’d be doing the next day. It helped reduce his anxiety. The message board featured: (1) Day/Date, (2) Location “You live at home with your wife, Sue, and daughter, Jean”, and (3) Appointments – this info changes daily.
·        In-home Signage: When they begin to look ‘lost’ in their own home, it helps to post signs outside each room to help them navigate and remain a bit independent. I also had to label the hot and cold water faucets.
·        Sundowners is Real (and sometimes scary): Like clockwork, when the sun started to set, Dad became more disoriented, agitated or confused. I turned on interior lights BEFORE sunset. I also engaged him in conversation or an activity during this transition time. It helped.
·        Behavior Issues/Medications: Quality of life care includes treating hallucinations agitation or psychosis. Keep notes to review with Mom’s neurologist. There are medications that can help to ease her suffering. My father benefitted greatly from Nuplazid. He was prescribed low-dose Xanax for emergency upsets. Dissolve pills in sparkling cider or grape juice if necessary. Pharmaceutical companies do have programs to assist with the high cost of medications.  
·        Activities: Here’s a good list to review https://www.aplaceformom.com/caregiver-resources/articles/dementia-activities
·        Personal Care & Bath Time: It’s embarrassing to accept help with personal care. I purchased a “dignity wrap” which kept dad covered while I helped to bathe him. He loved it. https://www.dignity-bath.com/
·        Prep for Hospital/Rehab Visits: When a dementia patient is hospitalized for any reason, they tend to panic in new surroundings. I made a Hospital/Rehab Care kit that contained: Inexpensive framed Family Photos with name labels (grandson Tim), a Life Events Poster (the date he married, where he worked, what he did, how many kids/grandkids, etc.), and an unbreakable jar of his favorite snacks. I used Command strips to hang items on the walls to meet facility requirements. It also gave staff topics for conversation with Dad. 
·        Engage Hospice Services – Hospice is not limited to the final days of life. For 1 1/2 years, my Dad benefitted from daily visits for bathing/dressing, weekly nurse visits, and visits from a social worker.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HER that makes all the difference, since you live with mom and are her primary caregiver. She reacts to your emotions and that's why it's so crucial for YOU to behave a certain way in order to get HER to react in a positive fashion. Good stuff here:

The Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.


I hope this info helps you as much as it did me. Very eye-opening info.

Don’t laugh- Google “Harmonica for COPD”.

A little music is ALWAYS a good thing!

Establish very strong boundaries with her and do not allow them to be broken for any reason. Asking her doctor to prescribe medications that can help to maintain level behavior is a good idea.
You don't have to correct her on everything. A delusion is okay if no harm comes of it and it makes her happy. Do not smile and accept blame for something that isn't your fault though. Correct her behavior. Do not tolerate any level of abuse from her verbal or physical.
When she acts up, tell her that she will not speak so to you then completely ignore her if it is safe to do so. Pay her no attention whatsoever and have other family members in the house do the same.
This may sound harsh, but really it isn't. I've worked in elder homecare for almost 25 years. I've had many clients in the early stages of dementia and even without who behave exactly like children. A child will see how far they can push adults in their life to gage how much they can get away with before they get any consequences for their behavior. They learn how much of a tantrum has to be had in order to get their own way. Children need boundaries. Elderly people need them too. Even with dementia. All people need boundaries. Caregivers have to make boundaries with the people they're caring for if they want to be successful at caregiving and if they want to maintain any level of sanity.
I always established my boundaries early on with clients. It helps. It will make the caregiving situation more tolerable and easier.
Establish boundaries with your mother and stick to them.

my moms dementia was a surprise because she declined swiftly in a 2 week period and was hospitalized due to behaviors of aggression. The doctor prescribed zyprexa and that is our miracle pill. It is second generation antipsychotic and she is no longer in terror and anxiousness. In the beginning, because she was aware that she was forgetting and that bothered her, I would make her a concierge schedule and give it to her nightly. She referred to this all the time. I gave it to her so she would know what was going on the following day and her daily routine. We knew the antipsychotic was a good thing because when we tried to wean her off (with her doctor help), she digressed and it was awful! When mom, who has awareness moments and then not so aware moments, becomes sad or confused, I tell her “it is okay, Mom, remember that you are safe and we love you and most important God loves you.” I also write that on her daily concierge schedule. Mom looked at a AL after we lived with her for 8 months and decided to try it for 3 months while we did family events with the other side of the family. She loved it so much that she took a tour of the other apartments and decided she had the best one! As she has declined cognitively, but is too aware for MC, I got her personal care assistant to be with her from 2-6 (the minimum hours for this service where we live). It has been a home run. Mom is getting showers, lotions applied, her hair fixed, walks and timely attendance to event in house and she has a escort to go to the dining hall and back. She is more forgetful in the evening and this was the best time for assistance. I also have her breakfast and lunch delivered if she doesn’t go to the dining hall. Mom and I talk daily and I am grateful that she is happy with her privacy and she and I are not interacting all the time as when we lived with her. She feels more like an adult by having her own apartment in AL with assistance. I am her daughter now and her advocate. I found a doctor who sees her once a month and I schedule and take her to dental and eye appointments. I/we are so grateful that mom is in AL and it has been good for her. She has more social interactions, she has a variety of food (and I have them cut it up before they give it to her) and she can control her own heat. Prayfully moving forward, we ask for God’s best plan and for his protections for my mom.

Using only holistic and OTC supplements has helped my mother. Mira Lax is a no-no. My mom's doc recommended Mira Lax for occasional constipation and when I was desperate to figure out how to deal with the dementia fits that would go on for 2-3 hours at a time, I started doing mucho research. Mira Lax is polypropylene glycol and it's horrible for everyone, especially dementia patients. When I took her off of the Mira Lax and started using good old Milk of Magnesia, or even a magnesium supplement when needed. It didn't fix or heal her dementia but it did stop the sundowning fits. I also give her Cranberry Fruit Extract (capsules) for her bladder health, Lion's Mane Mushroom liquid drops (in her tea) for mental clarity, Melatonin for sleep, Vitamins D, C, Zinc and Elderberry gummies, Dandelion Root Tea (instead of coffee) for bladder health. She is relatively healthy and doesn't take any other meds, so she really has no side effects from prescription medications to deal with. Peace.

We enlisted the help of a doctor that specialized in geriatrics and he was able to prescribe a low dose of antipsychotic medication which really helped take the edge of the agitation and paranoia. He also prescribed anti anxiety medication, which she needed and made a huge difference. My mother still has episodes but they are much shorter and far less frequent with these medications.

Aside from that, keeping her busy with helpful tasks (folding laundry, meal prep, etc.) and also easy activities like puzzles or simple card game - anything that doesn't require a lot of working memory. Magazines as opposed to books.

I feel for you - it's hard not to take these things personally, and it's hard to see a loved one acting this way. Be sure to be kind to yourself, especially since she isn't always able to be.

My mom needed a schedule to remain calm and not anxious. She did not so well with unexpected events. Even showers needed scheduling. We established a routine with her input. Eventually we found a great assisted living facility. Yes it is pricy. She admits she feels safer. She was afraid to be alone. She stopped having night time hallucinations after getting into a facility. We keep a routine for visits and use a note pad to write down when we will visit and if we will go in the car. She is happy and content. My mom is 88 yr old. Good Luck..a long road ahead..PS: Lewy Body Dementia does not allow “behavior meds”..it can make it worse! Be sure what you are dealing with.

My mom was on oxygen, had dementia, and pain from compression fractures. We had hospice to help for almost 2 years. Very small scheduled doses of xanax and very small scheduled doses of morphine helped her greatly. Morphine helps breathing.

I was agreeing with everything you wrote except the “smiling and accepting blame” part. Repressed emotions cause resentment. I recommend that you take care of yourself and your emotions by not taking blame or feeling guilty for a situation that is out of your control. Don’t worry about saving everyone’s sanity, just save your own. Take breaks, do something kind for yourself, get help, delegate tasks.